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Endometriosis: From the inside out

Thousands of New Zealand women suffer in silence with endometriosis, but early diagnosis is key to the effective treatment of symptoms.

Endometriosis occurs when tissue similar to the lining of the uterus (endometrium) is found in other parts of the pelvis. It acts in the same way (growing and then bleeding) but in an area where it cannot be shed, causing inflammation and scarring.

Symptoms can severely affect quality of life and, in progressive disease, there is the risk of reduced fertility.

Thought to affect at least one in 10 Kiwi women in their reproductive years, the condition causes a whole raft of symptoms that can be all too easily dismissed as “women’s troubles”: period pain, bloating, tiredness and lower back pain, to name a few.

Although it’s a common condition and treatable, there is often a significant delay in diagnosis – and early diagnosis can be key to managing endometriosis. One of the barriers to diagnosis is the myths that surround the condition and a general acceptance within society of some of its symptoms.

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“Painful periods are normalised beyond what is acceptable,” says gynaecologist Michael East, who specialises in treating endometriosis. “There is a difference between discomfort and distress.”

Among red-flag symptoms that should always be viewed as abnormal, East lists distressing periods, painful sex, mid-cycle pain, one-sided period pain, period pain pre-dating menstruation by more than a day or two, and pain emptying the bowel or bladder.

“At Sovereign, we cover around 100 surgical procedures each year related to endometriosis,” says CEO Nick Stanhope. “The cost of each surgery is between $9000 and $38,000, depending on the extent of the disease.

“We know there is a genetic link, but other causes of endometriosis are not fully understood. My mother had endometriosis so I know the impact that it can have on someone’s life,” he says. “That’s why I’m passionate about raising awareness and understanding. I want to ensure my two daughters feel comfortable talking about any symptoms they may be experiencing.”

There are four stages of progression and, as with many diseases, the earlier the condition is recognised, the more effectively it can be treated. However, Michael East says the only definitive diagnosis of endometriosis is through surgery where, with the use of a laparoscope, the offending tissue can be seen – and removed.

Unfortunately, the majority of endometriosis will not show up on any form of imaging and there is no clear association between pain and the stage of disease. The correlation that does exist is with age. Women presenting for the first time in their 30s are more likely to have stages three and four, which are more deeply invasive, harder to remove and more likely to have an impact on fertility – just at a stage of life when they may want to have a family.

East believes it’s reasonable to delay surgery in younger patients under the age of 20, and try contraceptive treatment, such as progesterone-dominant therapy, while surgery may be most effective at relieving symptoms and arresting the progression of the disease once women are in their 20s and beyond. If conservative therapy in the under-20s fails, then surgery should be considered. The Mirena IUD is also thought to be very helpful in inhibiting the recurrence of endometriosis and adenomyosis (a form of the disease that can’t be treated laparoscopically).

In East’s experience, the incidence of advanced cases in some parts of the country are trending down, which he believes is due to an early intervention initiative by Endometriosis New Zealand, called the Me programme. It has been running in Canterbury for 14 years and may be rolled out nationwide.

Most surgeries for stage one and two are completed within the hour, while stages three and four can take two hours or more. While the key-hole procedure is minimally invasive, recovery time is usually 10-14 days of rest followed by a very gradual build-up of activity.

East says there are many ways symptoms can be eased and self-managed. As 40 per cent of those with endometriosis also have symptoms of irritable bowel syndrome, dietary changes including avoiding gluten, alcohol and spicy foods may help, while physiotherapy and exercise can also be useful.